“I just want to play without pain”: the appeal of Leo, a butterfly child, to the EU Parliament (and the announcement that gives hope)

He is nine years old, his name is Leo, and he told the European Parliament what many adults are unable to focus on so clearly: he just wants to play, like all other children, without being afraid of hurting himself.

Leo lives with Epidermolysis Bullosa, a group of four rare genetic diseases also known as “butterfly baby” syndrome — a name that says it all about the extreme fragility of the skin of those affected. His day begins every morning at seven with painful medications that can last more than an hour, while outside the other children play and celebrate without thinking about it.

His speech in Brussels was a direct, concrete testimony, capable of making visible a condition that remains invisible for many: the constant pain, the sores, the continuous treatments, and the daily awareness of having to deal with limits that others do not have.

At the heart of the appeal is a specific request: access to Vyjuvek, a treatment already available in several European countries that helps wound healing in patients with this syndrome. In Spain — Leo’s country — therapy is not yet accessible.

His voice shook the chamber, and reminded legislators that behind every bureaucratic delay in access to care there is a real story, often that of a child just waiting to be able to run without fear.

A positive signal from Andalusia

A concrete signal comes from Spain. The authorities of Andalusia have announced that the Region will lead the purchase of Vyjuvek, the therapy authorized by the European Union that helps wound healing, reduces pain and improves the quality of life of patients with Epidermolysis Bullosa. The news was communicated directly to Leo and his family, with the expectation that the drug may be available quickly.

The Andalusian Health Service (SAS) will take care of the treatment against butterfly skin for the young Sevillian Leo and 45 other people throughout the autonomous community. This was announced on Thursday by the president of the Junta, Juanma Moreno, in the courtyard of the Parliament, where he appeared together with Leo, his family and a good part of the association that protects them, Debra.

The Spanish Medicines Agency has exceptionally authorized SAS to use the pioneering drug for the treatment of this rare disease, which affects around 200 people across Spain. “We will buy it in an exceptional way because it is not commercialized,” clarified Juanma Moreno.